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Patient Stories

NORD Debuts Rare Disease Day 2020 Video

This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the rallying cry,… Read More

Why Rare Disease Day Is Important to Me, by Chris Madden

Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who noticed an… Read More

Gina and Gia’s Story in Honor of Rare Disease Day

My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU,… Read More

Wyatt’s Story in Honor of Rare Disease Day

This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my… Read More

Zuhriah’s Story in Honor of Rare Disease Day

This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started… Read More